Post from November from Bread and Roses; 2nd day of our Smitshonian trip last month

Today I was running in D.C. in the rain. My feet were getting damp through my Dansko clogs and I could tell that the raincoat I packed was not really rain proof any more. My hands were getting wet, so I knew I couldn't really deal with the other parts of me that were getting wet or tuck my hair under my hood successfully.

I had parted with my husband and kids and mother and father in law as they began their day in the American History Museum of the Smithsonian so I could grab a coffee. I would absolutely need it to pull another full day of this kind of travel.

I came to a catty-wampus intersection that had a secondary pedestrian light in the middle of multiple lanes of traffic. My timing was bad and I was going to barely make it across the confusing part in time to make a run across half of the lanes of traffic. And a blind woman was going to get stuck in the middle, as she was just barely finding the light with her cane. She asked for help as I was deciding whether or not she would be offended by the offer.

We made small talk about the rain until the light changed. She wore a long wool coat that looked like it was working fairly well, but she pointed to her head and said, "All I need is a better hood."

Sunday, December 11, 2011

As far as I've seen, it's easier to get treated for lyme disease in Montana thatn to get diagnosed or thoroughly tested. My doctor, I'm certain, would continue further if I brought in compelling evidence. Which I think is a decent position for her to take. There were only so many tests I wanted following my Chronic Fatigue Syndrome diagnosis, once she felt we'd cleared all the remaining questions.

But I have so much in common with lyme disease patients (aside from my current recovery) that it has remained a lingering question mark. Bell's palsy, for example, can be a symptom of Lyme disease. And I did have a tick on me within a month prior to Bell's, and a red rash on my scalp within a month after. Although there was no evidence of a bite, there is often no evidence of a bite.

When Lyme disease had not yet been detected in Colorado, a Forest Service employee (as per the movie Under Our Skin) went in to a doctor with a ring shaped rash, a tick bite, and the tick in a jar. It still took hime two or three years to get diagnosed. So the idea that lyme is a possibility is not so far fetched. Montana doesn't have lyme disease because we're not testing for it, though we're not testing for it because we 'don't have it'.

My daughter's homeroom teacher (a junior high science teacher) has helped at least two or three local people get diagnosed due to her familiarity with the symptoms through her son (who almost died of lyme disease). In one of the cases, a student went home from school talking about ticks and lyme disease to her mother, who had been sick for months or years but hadn't had any luck figuring out the cause. When her daughter came home describing her symptoms right on the nose, she got tested, diagnosed, and treated.

Many people post in the Bell's palsy and CFS forums I read about their overlapping lyme symptoms, or about how lyme treatments are going. The two are reported to be indistinguishable by most methods of testing, but that is not an agreed upon fact. There is considerable politics and contention surrounding the topic. If you watch Under Our Skin and follow up with your own research, you come away with a pretty strong acknowledgement that some conspiracy theories are just not so easy to disprove. Some things sound unbelievable and far-fetched because they are attrocious, not because they are untrue.

So, while Montana does not have the right kind of tick, and therefore does not have lyme disease, it is not really disputed that we may have a Lyme-disease like agent adapted to local ticks, which an eye opening article refers to as a possible "cousin" to Lyme. A similar article citing the same source (Epidemiologist Todd Damrow) describes a patient with the 'mystery illness' having been helped by medication.

Other doctors support the possibility of lyme disease in Montana and report lyme positive patients who haven't traveled outside of Montana (also noting that insects are not the only transmission method).

Although these sources are all clearly of the same mind and possibly drawing conclusions based on the same general influences of thought, this certainly does not discredit them nor those influences, nor the validity of their doubts. In a addition to not looking for lyme disease here, reporting may also be flawed, and seems likely to be, at the very least due to the fact that CDC reporting standards are based on east coast lyme disease.

Officially, we 'don't have lyme' in Montana. Realistically, the degree of certainty with which patients with lyme disease similar symptoms are told they must have something else does not seem at all justified.

Wednesday, December 7, 2011

I like this picture. I posted some of Eric's pictures of Cheryl and Miguel before their wedding (he took their engagment pictures, which were amazing, and his work is captivating, to say the least). In chatting with him before the rehersal, I told him I have a special nack for ruining pictures, and he saw first hand after not realizing how serious I was, that I do have an uncanny ability to close my eyes and contort my face as a shutter closes. The above photo, though, I like.

My face was tired a lot that weekend and there is a fair amount of asymmetry in my face in other pictures, and now in general, even compared to earlier in my recovery.﻿ I also discovered that I have no control over my 'lesser' neck muscles on my Bell's side. I don't know if this is new or if I just didn't notice all this time. They aren't muscles I think I need for anything. But, by the way it feels to smile these days, there may be some other muscles that are either regressing or that did not heal the way I thought they did.

Most people would never know now by looking at me that I had Bell's. It's visible in some photos, espcially when my face is tired or when I couldn't tell my Bell's side wasn't smiling, so I didn't correct it. In this picture, though, it is hardly even visible to me.

I don't spend time thiking about it from the perspective of outright vanity, and interestingly that didn't even bother me a whole lot when I didn't know if I would heal. Frankly, I care more when I occasionally get a zit in various ridiculous looking spots on my face. I rarely spend time on my appearance. I thought about it in terms of attractiveness to my husband, though, I guess, as I healed. But not in the way you think about your hair or acne or crooked teeth when you're a teenager and you (truly, though not consciously) believe your value and acceptance are dependent on those things.

It worried me more with my kids and with interpersonal communication. People responded to me very, very differently when I couldn't smile. Responses ranged from akwardness to outright hostility. The differences in my face now impact interactions less, of course, but there are still subtle differences, both in my face and in the way I feel during conversations where subtle facial cues are important.

This photo captures how I feel a lot of the time around people. Not entirely sad, but someimes at least a little separate...working at connecting.

Like many major illnesses, Bell's leaves most of us a little wiser and more grateful than we were before, but also just unexplainably different.

Wednesday, November 30, 2011

Lobsterquotes is the twitter handle of an optimist (I'm assuming) who posts inspirational quotes. I can't click "favorite" fast enough to save all of the ones that catch my attention.

I had a good evening with the kids, forcing myself to breathe peacefully and FOCUS on the end of the kids movie we were watching, rather taking the opportunity to fret about work/legal matters. And if my mind wandered there, I thought healthy thoughts about what a healthy perspective would look like.

So when I opened my computer after they both went to bed, each twitter lobsterquote came with a calm breathe that took absolutely no thought or effort, and with a calm little wave of endorphines.

These are the ones I could "favorite" fast enough to save (gems, all of them).

A contented man is always rich~proverb

To know the road ahead, ask those coming back~Chinese Proverb

If you treat every situation as a life and death matter, you'll die a lot of times~Dean Smith

Family is a haven in a heartless world~Lasch

If you realized how powerful your thoughts are, you would never think a negative thought~Peace Pilgrim

Tuesday, November 29, 2011

Play that horn. Want to hear a secret? You’re awesome. (It’s actually not even really a secret.) This is going to be hard for you, O Modest One, but you gotta give yourself props today. Write three things you love about yourself – things you’re great at – or just want to share. Don’t you dare signpost or undercut those self-compliments!

Today is the end of 30 posts in 30 days. Traveling kept me from posting on time (traveling to DC and getting stuck in airports, then staying with my parents whose browser doesn't work with blogger), but not from writing my posts, so I am proud of this accomplishment, especially posting in two blogs. I found a lot of really great blogs through this, and it was incredibly timely, since I was just beginning to really see what's out there in terms of online health communities.

I love the positivity I'm finding through health blogs, but I am also impressed to see people bearing their souls because there's no way to measure the enormity of the benefit that does other patients. These blogs represent experiences and emotions and coping mechanisms you just can't find anywhere else. And for people with rare or invisible illnesses especially, you'll find descriptions of symptoms you're experiencing that you won't hear about from your doctor or any published resource, as they're just not formally documented yet.

The name tootsie roll comes from six year old son's recent obsession with tootsie rolls, to the point that he exclaims "TOOTSIE ROLL!!!!" when something makes him really happy. Or occasionally for no reason at all (and a couple of times he's even used it as an expletive).

Since the thought makes me chuckle, and since I need to be not-too-serious in order to toot my own horn, it puts me in the right mindset.

My first toot is not something I can take credit for, but something I am grateful for. I pulled this from a blog I read yesterday:

"I have chronic fatigue syndrome, the Bad kind, and it has changed and made its best attempts to ruin my life. But one must keep soldiering on. So I do, paint brush in hand." http://bealightcfsawareness.blogspot.com/

Since I don't have the Bad kind (given all the things I can do), I need to remember that each day. I can toot my horn that I do a pretty darn good job at that.

Each of the following quotes from lobsterquotes on twitter also inspired toots:

When we see a soul whose acts are all regal, graceful, and pleasant as roses, we must thank God that such things can be and are~Emerson

Toot: I am good at seeing the good in people

If you want to know your future, look at what you are doing in this moment~Proverb

I am spending my time as well as I can and working at being postive now, rather than after I get better or after my health-work-legal issues are resolved

I'm finding that bullet points help, so here are a few more for the road:

I've kept my daughter's girlscouts troop going throughout my illness

I asked for help with the troop from other leaders when I needed it

I've fought hard for the right to work, because I am someone who is very fortunate to be very high functioning---discriminatory responses to our illness can't be allowed to give us the worst of both worlds (people fighting for disability being told they don't qualify and people trying to work being told they can't)

I appreciate the help and support my husband gives me and do not take it for granted (though, like any care-giving spouse, I'm sure he would disagree with that at least some of the time)

I am determined to give my kids a more normal life to the best of my ability

To all of you participating this month, cheers to us (with whatever beverage our respective illnesses allow), we rock!

Thank you, WEGO Health, for the prompts and the energy spent toward community and hope!

May the wind be always at your back (and away from your Bell's palsy ear)
May your eyes both close whenever you want them to
May you smile with both sides of your face
And may you always taste your food

Sunday, November 27, 2011

Say WHAT?! What’s the most ridiculous thing you’ve heard about health or your condition. Was there any context? What did you think at the time you heard it – and what do you think of it now?

If ever the investigator for my EEO case were to read this blog, I would not want him to feel badly about this story. This is just another 'one of those things' about being sick, and something that will amuse me forever. I know he meant no offense, and I am finding him to be a detailed and thorough kind of person so far, which would make up for much, much worse than this commical story.

This is the story as I posted it in my favorite Bell's palsy forum under the title, "How could your bosses tell you had Bell's palsy?"

This is HILARIOUS to me.

I had my investigatory interview for my EEO case today and the investigator was asking how my bosses would have known I had bell's palsy. There is a question as to whether I provided a doctors note early enough, blah, blah, blah (I did, though).....the point is that after explaining that my eye was stuck open, the right side of my face didn't move, only one side of my mouth was talking, drooling, tearing, etc., I kept getting the question.

Finally my lawyer gave it a shot.

He spoke very, very slowly and said, "because....her face....was paralyzed."

He wasn't disrespectful to the investigator, just very, very slow and clear. It's all I could do not to laugh and it just cracks ME UP....which I just can't explain to regular people right now.

But I think in ten years I will still think of that moment and be very, very amused. Now there are funny answers coming to mind that would have been fun to say....but not very legally prudent.

And this is a picture of me during the time that was called into question (and my supervisors could easily have vouched for me, just from seeing me try to talk), although I'm more improved in this picture than when they saw me:

It's equally ridiculous that my bosses' boss told me that "I really didn't look that bad at all" with a tilt of his head and a change in his voice that sounded a lot like, "you looked just fine, so there was really no need to take all that time off." But I don't like to guess what other people are thinking, so I'll never know the actually relevance of his statement. But among the ridiculous things I've heard in regards to both Bell's palsy and CFS are:

If you can travel, you shouldn't need reasonable accomodations

If you are too tired to come to the office then you are too tired to work from home

Certified letters to your house during sick leave that include the first threats of discipline in your career even though you did nothing wrong "shouldn't be stressful for you"

This doesn't make sense to us (after so many explanations and no clarifying questions, this necessarily eventually translates to, "we don't believe you")

You probably just need to exercise more (I know people mean well, but its hard not think, "you probably shouldn't just blurt things out about medical conditions you're not familiar with")

WHAT HAPPENED TO YOUR FACE??!!!!! (this one was actually nothing but hilarious, as it was a close friend who doubled over in shock as she asked the question, having just walked in on me taking off my sunglasses and saying "argghh" while showing other coworkers the full effect)

Well, you didn't get sick until October 18th (um, really, because the paralysis started in May (though I didn't say it like that)--to which the woman replied, well, the form I have says October 18th, so that's when it started---huh, ok, thanks for setting me straight there, lady.....good thing you didn't apply any pesky tact to your statement or it might have been confusing for me (that wasn't out loud either))

I have friends who have told me their stories of being fired from work due to dystonia.. one sued her employer, but only won her job back.. she opted for disability and severence because the hostile work environment was not worth it... Another didnt even try.. because the symptoms were not worth the stress.

For someone of your stature in the dystonia world to take on this battle it will help those of us who arent able to fight against the discrimination that comes withy rare disorders. I wish you the greatest strength.. and thank you because even though this lawsuit is about you its for all of us!

Why I 'grabbed' it

The risk of fighting to protect our rights, for those of us with serious and rare disorders, practically make our legal protections null and void. Ther is not protection in real time, meaning that a person is very likely to lose their health while trying to save their job.

It is awesome every time someone does it. And I'm not saying this to toot my own horn, since I'm in a legal battle, too. I'm saying because each person that came before and did do something about it makes it that much more possible for me to get a fair outcome, whether or not I ever see the how and why and connectedness.

A disabled veteran with lymphoma (from shots he recieved as a military medic) that I met this week told me that he couldn't fight what was done to him, but that he went to war so I could fight what was done to me.

My Mascot! Give your condition, community, or self a mascot. Who is it? What do they represent? What is their battle cry?

This one’s a little too easy, given the title and topic of this blog.

But rather than a characterization of a turtle, I would use an actual sea turtle as a mascot/turtle.Meet Brutus.

This is Brutus at Laniakea Beach on Oahu.Brutus appeared in two or three blogs in early September, when I saw him twice on shore.I get the feeling he’s a regular and that he spends quite a bit of time in the sun each day that he comes.Each day volunteers place ropes around sunning turtles and for any turtle they’ve seen before and have information for they place interpretative cards. This a closer view of Brutus’ sign.

Clearly, he uses the energy he has very well and spends his down time well, too.These are a few shots of Brutus’ daily views while he rests on Oahu.

Traveling for the holiday and again finding myself without internet.Maybe Starbucks?Or maybe a neighbor without a locked wifi signal?We have wifi at home, and so do several neighbors, with very few people password protecting their internet.Either we’re just not computer safety savy or we’re not as concerned about sharing something that will cost us the same either way.So I’ll be stacking up posts again until I can post them.

Today’s prompt is ‘Health Activist Choice’. I choose hair.I’ve lost 2/3 of mine.Which I’m not thrilled about.It could be worse.There aren’t visible clumps missing and seems like it may be slowing down.But I’ve had a lot dreams about losing the rest of it.Especially before being a bridesmaid.Although even in those dreams I willed it to not fall out until after the wedding.

Tuesday, November 22, 2011

The NHBPM prompt today is about being present and showing a scence descriptively:

So the 22nd post – describe something with as much sensory imagery as you can. It can be scene (a peaceful one is what the original prompt said). What are the sights, sounds, scents, and feelings? Feel free to draw upon a particular story or moment or place that means something to you. Use lots of description and “show” instead of “tell” for this blog post.

On October 22nd I was standing in the shade between incredible women in my friend Cheryl's life. We were controlling our giggles today, as compared to our unfortunate lack of self control standing in the same position at rehersal the day before. Cheryl's sister and law and cousin, behind me, had been the worst initially. Judy, in front of me, did well until I asked her if my boobs were crooked, at which point she and I were no better. Especially when we let the other three bridesmaids in on the challenges I was having with the bra cups that some of us were considering using with our bridesmaids dresses.

Monday, November 21, 2011

Today’s prompt is to do an Ekphrasis blog post. “Ekphrasis” is writing about another art form. Like when people write songs about paintings or write a poem based on a dance. From wikpedia:

Ekphrasis has been considered generally to be a rhetorical device in which one medium of art tries to relate to another medium by defining and describing its essence and form, and in doing so, relate more directly to the audience, through its illuminative liveliness. A descriptive work of prose or poetry, a film, or even a photograph may thus highlight through its rhetorical vividness what is happening, or what is shown in, say, any of the visual arts, and in doing so, may enhance the original art and so take on a life of its own through its brilliant description.

Mine are all photos and videos of other art forms, mostly by me with a few by my 12-year-old daughter, Katie. This topic is a lot of fun. Though it's very easy to underestimate how much time it can take to make media sharable (my morning has gotten away from me).

Ekphrasis One ~ Sea Turtle ~ Portrait of a painting
*photo of an outdoor painting near an art shop in Haleiwa on Oahu

Sunday, November 20, 2011

Today's National Health Blog Post Month prompt is to describe an event or something else that made you laugh. A few things quickly pop to mind.

Recent Christopherisms (my six year old):

In DC, our first night in our hotel I found his shirt hanging from the ceiling fan. I ask how it got there and he says with a straight face and shrugged shoulders, "I really don't know.....somehow it just GOT there. Something must have happened to it."

The prompt for today is to repost a post from your archives.I don’t know when I’ll have a good internet connection again to post, so there will be at least a couple of days worth of posts coming through together for both blogs.

“Best of” post. Grab a post from your archives and repost it! Add a few sentences at the beginning to frame it. Why you chose it. Why you liked it. And why it should be shared again.

This wasn’t my first post, but it was very early on, before I’d really gotten started.I was so moved by the experience that I had to write about it, though I knew I couldn’t do it justice in words.After seeing the turtles I described in this post, I kept finding linkages everywhere between turtles and healing.I still need to retrace my steps (in books and online) so I can track those linkages down again and finish describing at least some of what I found.

Today we're on our way home from DC and I still am not going to have a reliable internet connection, so I'm getting this started in hopes of posting later. We got a connection long enough to check flights, but not long beyond that.

That also makes it difficult to sift through the health blogs that have inspired me. So I may do this one again later in the month. I do remember my first comment, though. It was a blog about blogging, on a post discussing common novice mistakes---all of which I was making at the time (and I'm still making several).

Today I don't have internet consistently, so I may have to wait to post this, but today's prompt is:

Let It Be. What’s something that bothers you or weighs on you? Let it go. Talk out the letting go process and how you’re going to be better to yourself for it.

I’m challenging myself to keep it short or to keep it positive.If it’s both, that’s even better.

I’ve been teased for dwelling since I was teenager.I like to turn things over and make sure that I’ve figured out what I need to about a situation and have resolved it as much as I should or can before setting it aside.I’ve always envied the ability of people around me to just not think about something, or to at least act like they’re not thinking about it.

I can’t set aside my work situation until things are legally resolved and I’m earning a paycheck.And letting go of past details is particularly challenging during the investigation period, because I have to recall facts and dig through past documentation.But chewing on it when I’m not directly answering or digging is going to get me if I’m not careful.I want to keep this recovery going and not slide backwards again.So I am resolving not to dwell on the people or the past involved in this situation when I’m not engaged directly in the process.

I would love to find a quote or a poem, but my internet just isn't lasting long enough.

Wednesday, November 16, 2011

Today's National Health Blog Post Month prompt is the little engine that could, and today's picture, below, is my kids at the Smithsonian next to tone of the nation's oldest steam engines. It used to derail a lot, but look....it's still here.

Monday, November 14, 2011

I'm traveling as of yesterday, so day 12's National Health Blog Post prompt (a tutorial on something you love to do or are particularly good at) took three sittings (and internet connections) to get down. It also morphed from monitoring Harelequin ducks to being a Harlequin duck. Which would be fabulous (they have impecable taste in mountain-stream-habitat). It's cheesy and it may not be all that readable to the average patient, but it has definitely been cathardic for me. I haven't seen some of these pictures in a long time, but have them on this hard drive.

Sunday, November 13, 2011

Yesterday’s prompt for NHBPM was to teach a class; to post a tutorial on something we do particularly well (and/or enjoy, as far as I can remember).

I posted a few pictures yesterday of Harlequin ducks (and a black bear that happened by during a survey).I couldn’t finish the post because I just haven’t had as many spoons to work with this week as I’ve had most of the time over the past few months.At the moment, I’m finishing on an airplane from Kalispell to Minneapolis.Appropriate that I’m migrating east to west, as Harlequins do (as opposed to most north/south migrations).

Saturday, November 12, 2011

Teach a class. What’s something that you’re uniquely great at and could teach a class on? Write the tutorial in a blog post. Bonus points for images, links to resources, and video.

I can't give a full lesson today, but I'll share some pictures as a teaser. We had a service unit campout for girlscouts last night. I came home and unpacked, then packed for a trip to DC. Staying up later than this to type would be a mistake.

I did find some of the photos I wanted to share, though. Monitoring Harlequin ducks was one of my favorite parts of my job. This poster (I made this for posting at all of our river access sites and certain trailheads) give a little bit of the why's and the what-to-look-for's, followed by some pictures from a fairly eventful five minutes of survey the summer before last (between Bell's palsy and CFS diagnosis).

Friday, November 11, 2011

Today (11/11/11) the post prompt for NHBPM is to write about what works well in your community. I'm speaking to the healthcare aspect of the question.

Living in a small town means the my options are limited. Fewer specialists and fewer types of specialists, meaning it can be harder to avoid stigmas about an illness like mine. Endocrinilolgists here "don't see" chronic fatigue syndrome patients and the rheumatologist here that does....well, I don't think he fully "believes in" this disease.

Thursday, November 10, 2011

The future of online activism. Our favorite social media sites are constantly undergoing renovations to become quicker to navigate, easier to interact with, all encompassing, mobile, and everywhere. Imagine the same thing about your community – how will they evolve, improve, and grow?

What do we gain the most from social media? Community.

What do we need the most from social media? Community.

In what way are we already doing it right? Community.

When boreal toadlets mass together they can raise the water temperature by multiple degrees compared to the water around them

Disease specific communities

Each disease has its own set of primary current needs. As a community each disease group has a unique set of overiding goals and as patients they have a unique set of symptoms and daily challenges. This leads to duplication in topics when we all start blogging within our specific disease and amongst the broader health community.

In the larger health community there are certainly similarities that let us support each other across conditions. But there are subtleties here and there, in addition to the more obvious enormous differences that mean that each new blogger (thousands and thousands) can fill an exact niche that is useful.

Some bloggers have skill sets allowing them to simultaneously work toward community needs, individual patient needs, and our need to see who these authors really are and what they are really dealing with. Some of us take smaller bites or excel at a more specific piece of what our community needs.

If you are writing about yourself between crashes, feeling like your story is too tangled and too specific to guide anyone else...it may be for some readers. But you also may be the first person or the only person whose story resonates with a desperate patient scouring the internet for exaclty what you have to offer.

Multiple recent tweeted quotes from @lobsterquotes hit this idea on the head:

No snowflake ever falls in the wrong place~Zen saying

Arrange whatever pieces come your way~Virginia Woolf

Just because something doesn't do what you planned it to do doesn't mean it's useless-Thomas A. Edison

You may think your actions are meaningless and that they won't help, but that is no excuse, you must still act~ Gandhi

Community needs ~ its in the wind

As a community of health bloggers, we are already keeping up with and adapting to the social media tools as fast as they keep coming. It's an overwhelming task, but we're already proving ourselves up to it. We'll keep up with whatever it brings in the future.

As the author of "Tales of Rachel" posted this morning, logos and trademarks won't make the future of blogging. These are temporary things that eventually lose their meanings. I agree. Each new movement eventually does, too, but they each help us gain quite a bit of momentum during their time.

Momentum forms the vehicle by which these thousands of small contributions, paired with those multi-talented, multi-scale contributors I mentioned earlier, will continue to motivate the medical community and the funding of research that leads to better basic information about the disease, better tools for defining/diagnosing/curing the disease, better acceptance of the disease, or better protections for people with the disease. These are the ways in which I see the small-scalers contributing to the larger-scale needs of a disease-specific health community even more moving into the future. There will otherwise be no motivation for these answers to be sought for a multitude of otherwise unprofitable diseases.

Small scale patient bloggers

The small-scalers are the future of applied patient advocacy....they are the answer to "what now" when the broader needs are met (or strides are being made) for a given disease.

Chronic fatigue is a perfect example. The progress made in the past decade toward acknowledgement and acceptance of this disease is remarkable. We are still lacking a lot of answers, but we've also gained a lot of answers we didn't have ten years ago---answers of the type that gain validity and access to care for patients.

With as far as we've come, why is it still so hard to this "stick" in the real world? With so many answers available, how are so many doctors and employers and agencies still able to ignore what's been documented and proven?

That's the part that's up to us (the 'applied' part). When you know that you are not alone, you know that you are representing a group of patients when you decide whether or not an injustice is worth fighting. You realize that its easier to take a partial victory when you can get it, but if you let the prinicple go, you are leaving a bigger fight for the next patient or employee or friend who is faced with that stigma. And you strengthen it by letting it go.

When the world starts gradually convincing you after recovery to look back and see it their way....that you got better because you realized they were right and you just needed to get out of bed and be positive and fix your broken attitude....in order to have a more digestible and appetizing story to tell, you will say no. You will remember your community and remind the world that your recovery does not negate the illness or the injustices you faced while you were sick. You will remind the healthy that it could happen to them and they will listen.

This is how stigmas die. This how health blogging will grow stronger and continue to tangibly change the future of healt care and patients rights.

Repetition is everything, with the strength of the message compounded exponentially with each voice.

Arrange whatever pieces come your way~Virginia Woolf

This post was interupted by a trip to urgent care to get my daughter's shoulder x-rayed. She seperated a joint in gymn class (I like her gym teacher but backward running towards other kids running backwards is not my favorite activity for my tiny daughter to participate in), but as far as they can tell nothing is broken.

Wednesday, November 9, 2011

My personal brand. As a Health Activist, you are a front-facing leader. What do you imagine you look like to your readers? What qualities do you possess. It’s ok to toot your own horn today – you have full permission to indulge. And don’t hold back.

If you found this blog through twitter, or are linked to me through any type of social media and have received more "updates" about blog posts than you would ever want to receive from any single person, then you know already about National Health Blog Post Month. Today's prompt is to consider your personal brand...what you imagine you look like to your readers, what qualities you possess, what you promise to your readers, and what you think makes your blog great.

If you are not a blogger or are a new blogger like I am, this may sound either self-serving or non-applicable. I am just staringt to see exactly why this matters, especially if you blog about health.

I mentioned in the last day or two (in one of the two blogs I'm participating in NHBPM with) that most of the health blogs I've gained the most from are ones with authors who have learned to get their work "out there". If they hadn't taken the time to do that, I'd be missing out on recovery tools.

These have been emotional tools, blogging tools, writing tools, specific health tools, and helping-me-remember-there-are-other-sick-people-in-the-world tools. Patient networking is invaluable, but probably becomes all the more essential the more rare your disease is. Although patients know best with common illnesses, too.

There is information posted by patients on-line that you will not find anywhere else. Really, truly, anywhere. I may over use this example, but if not for a Bell's palsy forum, I would never have known to be elated the day I woke up feeling like I'd been punched in the face. It was excruciating, but it meant I would probably soon be getting some movement in the paralyzed side of my face, which I did. I also may very well have needed pain medications, because I would not have known how miraculous moist heat is with Bell's related pain.

Networking is the next step that evolves as you realize you will get more out of all of this blogging and searching-on-the-internet time as you progress beyond lurking. And its OK to look at your numbers over and over and wonder who's reading as you try to decide what it is you're trying to accomplish. Are those hits all spam-bots? Real people? Patients? Real life friends?

The rest of the question

If you think of your online community, your blog, your site, your “presence” as a brand – what qualities and components do you present to your audience (your consumers)? What is your mission statement, your individual lexicon, your own style? What do you imagine you look like, as a brand, to your readers? What do you promise your audience and what should new readers expect? It’s ok to talk about yourself today and share what you think makes your message and your blog great – you have full permission (granted to you by the all powerful NHBPM) to indulge and get creative.

If you don’t think your brand really exists yet – what would you imagine it to be? If you could be a professional Health Activist, what would your business cards say? Why should patients or members of your health community read you? What makes your blog special and what makes you unique? What topics do you write about often and what major themes do you address?

Turtle Medicine

Message: Healing can come from anywhere at any time. It can't be sold to you and it's not mind over matter in the pull-yourself-up-by-your bootstraps, just-tough-through-this way that soooo many people can't help but advocate to sick people. Paradoxically, healing can be miraculous and positive thoughts do make a physical difference. In that regard, we can sell healing to ourselves and to each other as patients.

I sold (or gave or foud) myself a slice of recovery through sea turtles....somewhere in me I believed that finding a sea turtle was going to be a first step in my recovery. I didn't say this out loud or even consciously realize it until I was with my kids beside turtles. Since then, finding in literature and in historical accounts the significance turtles have held in healing traditions for eons is really not any kind of a surprise.

I'm more than a bit scattered so far in tying all of that into broader topics and making my blog useful. But that is partly newness as a blogger and partly the pace of my recovery. Living life each day is part of recovery and I blog about that. I overlap more and more lately between my blogs but that's a good sign because it means the gap between what I see as my 'regular' life (Montana Momma blog), my sick-person life (Turtle Medicine), and my stuck-in-the-EEO process life (Bread and Roses) are gradually starting to become less seperate; less divergent.

I envision moving on in my life and getting to let Bread and Roses sit idle or mostly dormant, becoming documentation of something I dealt with in the past. The other two could probably meld now, but they would meld most smoothly if I were transitioning into writing about my life after illness. But even considering how positively I have reason to be viewing the future right now, coping with life as a sick person has to stay high priority.

Branding: I just don't know if I'm structured enough to build in that direction. I want to keep blogging as recreational as I can, but still find ways to evolve and grow. I like it that people look at my blog. But I don't know what to make of it. There aren't "followers" but there are people looking. I don't know how hard to work on changing that prior to knowing what it is I have to share.

Favorite Brands? Questions for the rest of you

If you have a brand, how long did it take you to really get going? What brands to people look to the most as patients? Are you mostly looking for human stories or expertise? What are the names that pop into your head first?

Tuesday, November 8, 2011

3 Truths and 1 lie. Tell us 3 things that are true about you, your condition, your Health Activism, or your life. Now tell us 1 lie. Do you think we will be able to tell the difference?

My dad was the first person in Oregon to survive meningitis, the second person in the nation, and the first baby. The nuns had already done last rights and asked my grandma if they could try penicillin, since he was not expected to survive anyway.

A year before I got sick with my current conditions, I had to recieve the rabies vaccination series after getting bitten by a bat.

Of all the places in the world to select my research area for graduate school, I selected the exact same drainages where my family had been working and living for three generations before me without knowing anyone in my family had ever been here before. I moved here before finding out and my kids are now fifth generation.

When we checked my daughter into oncology to start chemo, they sent us home because her tumors were gone.

Monday, November 7, 2011

Today's prompt for National Health Blog Post Month could not be more timely. The prompt is to write about something that gets you down, burns you out, or makes you sad. Purge it in a blog post. Turn it around at the end. Tell Tuesday why you’re ready for it.

Monday

As I just tweeted, I am less than two hours away from my investigatory interview, beginning the interview phase of the EEO disability discrimination complaint process. This is the focus of my blogging this month in the other blog I'm participating in NHBPM with (I keep the discrimination stuff over there, for the most part, so I can be more positive in this blog).

I'm sure I'm over-posting about this interview, and interestingly doing it without really saying all that much. It's just that there is toooo much to say. Monday is not a good day for something like this!

I haven't had butterflies like this in a very long time. It reeeaaaallly isn't helping my IBS, which hasn't acted up like this in weeks aside from dietary mistakes.

Yesterday's post in Bread and Roses (the other blog I just mentioned) was supposed to be a run down of the main points I wanted to make sure the investigator is clear on. But it broke down into negativity, so I cut it short and went to bed.

I need to find a way to stay calm, get my paperwork in order if I can, and wait for the call. I've waited for this for months and it doesn't seem like a phone call could do it justice.

Tuesday

Tuesday will be great? Tuesday will be great. I will be done with the interview and maybe have some idea of what's next. Most importantly, I'll be done with the interview. I'll have heard the voice of the investigator and hopefully have some idea of how thorough and competent he is.

Uugghhhh!

I should be excited to finally be at this point and get to say what needs to be said, but this process has taught me that there is ALWAYS cause for fear, especially when a new person enters the picture.

Sunday, November 6, 2011

If I could do anything as a Health Activist… Get aspirational. Money is no longer an option. What is your biggest goal that is now possible? How could you get there?

Now bring it back down to size. How much of this can you accomplish now, in a year, in five years?

I aspire to selfishness?

My first approach to this is to envision myself living the life of other bloggers. I would love to be posting about my post-CFS life, or how I got my job back (or a better one), or how I'm earning a paycheck and helping bring my family back from financial ruin, or how I've created a life equally satisfying to the one I lost to illness and discrimination, or......this one's the biggest......that I just ran a half marathon or went backpacking.

It's interesting, though, that these are the emulations that have the most to offere me. Even though the authors I'd be emulating are making enormous contributions. And I would be a success as a Health Activist if I were making those contributions.

Saturday, November 5, 2011

On this fifth day of National Health Blog Post Month, helath bloggers are prompted to consider 5 things that changed our lives. For better? For worse? What five things changed our lives as patients, caregivers, or Health Activists and how?

I could approach this list in many ways, but my list reflects the top 5 things that have influenced my approach to advocacy as a parent and patient.

As an example, I was told this fall that I couldn't register my son for kindergarten unless I either repeated some of his vaccines (I was told they were not recieved recently enough) or claimed religious exemption (though my son would not be allowed to attend school whenever certain illnesses were reported).

The school initially held their ground even after my position was upheld by the county and my doctor. Without showing me names, they showed me examples of other kids who also had to repeat the shots in question. I refused and by the end of the day had an apology and a registerd kindergartener (with only the appropriate number of vaccinations).

That might not have been the case, and several other health care situations may have ended differently for my family and I if not for the influence of the situations listed here.

#1: My sister's diabetes

She was 8 when she was brought to the ER with a blood glucose level of 1200. I am often told that this could not be the case. It was far higher than any number the hospital had seen and last rights were performed. My mother had been repeatedly told that it was the flu and to give it a few more days.

Friday, November 4, 2011

Today's topic from WEGO Health for National Health Blog Post Month is, "what happens after you press 'publish'?" prompting bloggers to meditate on blogging itself and their steps and processes.

Since I am posting for this challenge in two blogs, this is my eighth NHBPM post. I am new enough to blogging that my process has changed since the first posts of the month.

I have only recently discovered twitter, and as each new account gets linked to the others (which I am sometimes aware of and sometimes not) the publishing process becomes a little simpler and a little more complicated, in turns. This would make my post-publishing steps make me sound like a crazy person so far this month. Roughly speaking, it is very similar to that described in the well-written diabetes health blog "Sweetly Voiced" with the added complications of linking and unlinking facebook and twitter and learning to use a hashtag on twitter.

None of these things are truly complicated. But when you put them all together in the mind of an already ADHD-diagnosedCFIDS patient, you have....hyperfocus.

About this blog

I started following sea turtles early on in my illness. In their presence I never feel like a sick person. I use the blog to share and keep track of useful articles and links and capture snapshots of my life through illness, diagnosis, and recovery. I've come a long way so far, and even my ability to write coherently has obviously improved throughout the life of this blog.